Friday, February 10, 2012

A Mommy's Mission

Welcome to my blog!!! I can honestly say this is the first time I have ever created or been interested in writing a blog! My mission is to raise Ichthyosis Awareness.

"....Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin.  Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime....."

After my son Evan was born with Harlequin Ichthyosis, I did not reach out to others affected and only shared Evan's story with close family and friends. Recently a baby was born in Illinois, who is also affected with Harlequin Ichthyosis. After reading the blog, Blessed by Brenna I became inspired by her mother to reach out to the Ichthyosis community. And boy am I glad that I did! The support I have already been given in such a short time is an amazing feeling. It is very comforting to speak with other mothers who have an affected child.

Though the support I have been given from these mothers has been so helpful, I can not forget to mention the enormous amount of loving support from our family, friends and community. My husband and I can not thank everyone enough for all of the generosity, kindness, and help given to us and Evan. A very special woman has dedicated a lot of her time raising money for our family by accomplishing her first marathon. (Thanks Jenny!) Our community has been extremely supportive and has included us, twice, in the annual Possum Queen Charity Event. It is amazing to see the community come together to support us and others who need it. We can't even begin to thank you enough!!

I have been reading about Rare Disease Day 2012 and was given the idea to start a blog and to begin raising awareness. I never thought of what life would be like taking care of a child with a rare disease/disorder. Now I can not imagine my life any other way. Evan brings joy to my life everyday and I am forever grateful to every doctor and nurse that cared for him to get him where he is today.

After Evan was born we were introduced to the FIRST Foundation. The FIRST Foundation's mission is to inspire, educate and connect families who are affected by Ichthyosis in some way. FIRST provides emotional support and information regarding this disorder and funds research to improve treatments and eventually find a cure. As of right now there are only TREATMENTS for this disorder. That's why we need your help!!!

By donating to FIRST you can help fund the research necessary to hopefully, one day, find a cure for my precious baby boy and others affected.

How can you say NO to this happy face??? DONATE TODAY!!!!!



Stay tuned in to this blog for future fundraising events for the FIRST Foundation.



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2 comments:

  1. Diane - This is a great blog! Evan is a beautiful warrior.

    Holly Werenko :)

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  2. DeDe you are a special mommy and friend and yes Evan is a precious little warrior. Thank you for your support of Brenna Courtney Evan and Connor . Prayers for your family

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